Wait times force mother to spend £1,500 on son's autism diagnosis

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Isabelle spent over £1500 on her son's autism diagnosis after being told she could wait up to three years on the NHS - Credit: PA Wire/PA Images

A Suffolk mother has spent over £1,500 on her son's autism diagnosis after being told she could wait up to three years on the NHS.

Isabelle, whose name has been changed for privacy purposes, took her 13-year-old son to her local GP and was referred to NSFT's Emotional Wellbeing Hub in November. 

She was then informed she could be waiting for anywhere between two to three years before being given an appointment.

"I was told that would have been the wait time for the referral to be looked at and for my son to get an appointment", she said. 

"For an assessment of autism, there would then be multiple lengthy appointments. 

"So it could have been another year after that before he even received a diagnosis."

Isabelle said the delay has impacted her son's school and home life, with the teenager's emotional, mental and social wellbeing having been impacted immensely. 

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As a result, she felt such a long wait was unacceptable and was forced to turn to private healthcare.

"I spent £320 on a paediatrician, £350 on a psychiatrist, £170 for 30-minute appointments and then £850 on an ADOS (autism assessment)", she said. 

"I expect the total cost to be over £2,000.

"The cost of all of this has meant we've had to sacrifice so much, including food and days out."

Isabelle's son has been diagnosed with autism and ADHD by the private clinic, with an education welfare officer since opening a common assessment framework (CAF) for additional support.

Official confirmation of the diagnosis is expected in September.

Deputy chief executive of NSFT, Cath Byford, said: "We know that we need to do more for those people who are waiting.

“Demand for all of our services has increased significantly following the Covid-19 pandemic, while gaps in the NHS workforce have also had an impact on waiting times. We are working with our system partners to find ways to reduce these waits while also recruiting additional staff so that we can make sure people can access our services more easily.

"As a result of this work, we have been able to reduce waiting times for the Autism Diagnostic Youth Service Suffolk (ADYSS) to around a year. We know this is still too long to wait.

“All referrals for a youth autism assessment go to Barnardo’s, which offers signposting and support to young people and their families while the referral is triaged.”